A shift away from surgery on babies of indeterminate gender.

Health and medicine explained.
June 8 2004 7:00 PM

The Cutting Edge

Why some doctors are moving away from performing surgery on babies of indeterminate gender.

Illustration by Robert Neubecker

Approximately 10 times a year in Houston, at the birth of a certain type of baby, a special crisis team at Texas Children's Hospital springs into action. Assembled in 2001, the unusual team includes a psychologist, urologist, geneticist, endocrinologist, and ethicist. Its mission: to counsel parents of infants sometimes referred to as "intersex" babies—that is, babies of indeterminate physical gender.

That such a team exists—and that it often counsels deferring surgery for infants who are otherwise healthy—reflects a radical new thinking among doctors about gender identity and outside efforts to shape it. Instead of surgically "fixing" such children to make them (visually, at least) either male or female, a handful of U.S. specialists now argue that such infants should be left alone and eventually be allowed to choose their gender identity. The approach challenges decades of conventional wisdom about what to do with infants whose genitalia don't conform to the "norm." Until very recently, such children were automatically altered with surgery, often with tragic consequences.

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Each year, about one in 2,000 children is born with ambiguous-looking genitalia. A wide range of disorders may be responsible—genetic defects, hormonal abnormalities, or unexplained developmental disruptions that occurred in utero. Sometimes the gender anomalies don't appear until puberty or later when children's bodies begin to mature, or fail to do so: A child with, say, an androgen disorder who formed male-looking genitals might genetically be a girl; another child might have the male hormones of a boy but, because of an interruption in the process that forms male genitalia, may look externally just like a girl. Many anomalies, however, present themselves with bewildering immediacy: tiny penises, enlarged or "virilized" clitorises, or what appear to be a hybrid of male and female genitalia.

For 50 years, the medical response to such external abnormalities has been the same: operate quickly to make the genitals as "normal" as possible, then hide the child's medical history even from parents, in the hope of reinforcing the new gender. Convinced they were doing the best for their patients, doctors in the past labeled ambiguous children boys or girls according to the alteration that seemed most feasible and performed highly invasive, irreversible surgeries accordingly. Thus a boy with a tiny penis might be castrated, given a rudimentary vagina, and designated a girl. Even more commonly, in cases in which a girl's clitoris looked larger than the norm, her clitoris would be cut away entirely.

Parents never heard that the interventions were essentially experimental, nor that they could wound the child emotionally as well as physically. Until a couple of decades ago, parents might simply be told, "Your child's genitals didn't fully form; we'll do a procedure to fix them." Today parents are more fully informed of the details of their child's condition and the consequences of any operation. Still, the great majority of hospitals continue to recommend and perform "normalizing" surgery in the first year of a child's life.

But new evidence, including a recently published study in the New England Journal of Medicine, is showing that the way we acquire a gender identity is enormously complex—and that imposing gender—physical or social—on a child can have catastrophic results. (Click here to read about the study.) Of thousands of adults who were subjected to physical assignments and who have reported their experiences in recent years, the aftershocks have ranged from rage at the destruction of sexual function, to conflicts in school and relationships, to depression and attempts at suicide. Until recently, though, there's been little science to either support or refute these anecdotal accounts. And because the surgical "treatment" of children born with ambiguous genitalia has, for the last 50 years, been shrouded in secrecy, there has been little if any medical follow-up.

So, what is it that determines gender identity? It's a difficult question. Scientists simply do not know what creates the internal sense of being male or female. What's increasingly clear is that gender identity does not necessarily follow from genes, upbringing, or anatomy, even in people with ordinary genitals. That growing recognition, some doctors say, has prompted a new humility about making those decisions on a child's behalf. "The hardest thing to consider is what gender the child will feel like," explains geneticist Chester Brown of Baylor College of Medicine. "And really, at such a young age, it's impossible to assess."

The mechanics of gender identity seemed simpler a half-century ago. Doctors confidently altered the physiques of children of indeterminate sex by applying new advances in hormone synthesis and plastic surgery. Female genitalia are easier to craft than male, so female was, and still remains, the default assignment. By 1967, a Johns Hopkins psychologist named John Money was arguing that, in the first 18 months of life, gender identity was just as malleable as physical gender. Consulted in the case of David Reimer, a baby boy who'd lost his penis in a botched circumcision, Money persuaded the child's parents to raise him as a girl. The 22-month-old was castrated, surgically given a vagina, and kept ignorant of his original gender.

Money's work helped codify the treatment model. If socialization could shape the gender identity of a biological boy, Money proposed, assigning gender surgically was even more likely to succeed in cases where the child's external sex was less defined. The theory seemed progressive, almost utopian. Heartbreaking physical anomalies could be fixed and then forgotten. Gender roles, meanwhile, appeared to have been freed from the dictates of nature.

The problem was that Money's findings were wrong. Brenda, as she was called, grew up troubled, alienated, and suicidal. (Click here to read John Colapinto's account of Reimer's life and suicide.) It's easy to wonder how much Reimer's childhood traumas bled into his adult life. Money, meanwhile, no longer comments publicly on the Reimer case, but his theory and practices remain influential.

The sort of interventionist strategy encouraged by Money creates its own deformities, says Cheryl Chase, founder of the Intersex Society of North America. (For Chase's story, click here.) It might seem that designating gender for ambiguous-looking infants is a mistake altogether. Yet even the most vociferous antisurgery activists say gender labels are necessary to exist in our culture. They argue, however, that doctors should simply refrain from medically unnecessary surgeries that make those labels permanent. The important thing, Chase says, is to allow children with ambiguous genitalia to come to terms with their identities and to provide them with counseling as they do so.

But many physicians find this thinking unethical. Urologists argue that genital surgeries have the best outcomes if performed early in life. Other doctors insist that most reassigned children go about life quietly and—they presume—contentedly. Between neighborhood gossip and the casual body exposure typical among small children, these doctors point out, a child who looks unidentifiably male or female will quickly become known to his peers. Leaving such children unaltered, writes Columbia urologist Kenneth Glassberg in the Journal of Urology, cruelly exposes them to "be considered freaks by their classmates."

Meanwhile, even those who advocate avoiding early surgery concede it's not always clear how to answer a small child demanding change to his or her external gender. (As with all aspects of the issue, no statistics exist to show how often these requests take place. The state-of-the-art team at Texas Children's, for example, has only been in operation for three years—so its patients are barely old enough to talk.) But there are some clues: At age 3, almost all children identify themselves as a particular gender, announcing, if asked, "I'm a boy" or, "I'm a girl." They may also have wishes about their external genitalia—a 3-year-old, say, might want a penis, even if she doesn't fully understand what that is—but a child of 3 or 4 can't really understand the implications of surgery. At age 13 or 14, according to conventional child-development theory, children are mature enough to start making serious decisions—such as choosing surgery with a full understanding of the consequences.

With these guidelines in mind, the Texas team tracks its patients carefully, offering families psychological counseling, peer support, and medical monitoring. The goal is to help the children themselves to decide finally how they want their bodies to look. This team is one example that, across the country, the reflexive use of gender reassignment surgery is waning. But not quickly enough. Unless they're born in Texas, the great majority of ambiguous-looking babies will still be "normalized" with radical, irrevocable surgery in their first year of life.

But the anecdotal and scientific evidence is making it increasingly clear that this approach, which once seemed obvious, is not in every child's best interest. Doctors acknowledge that it is often medically unnecessary; many former patients argue compellingly that early surgery can be physically and psychically destructive. In the chaotic first months after a physically anomalous birth, then, it's the parents who must guess how to best ensure a happy future for a healthy but different-looking child. That child will later have more options if his or her parents decide, first, to do no potential harm.

Claudia Kolker is a writer based in Houston.

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